Spring 2015
Quarterly Magazine for Victoria and Tasmania
* Introducing MyHeart * Foundation 25 *
Volume 25 Issue 3
People's Choice PJs Run
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awareness
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research
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advocacy
Matters of the Heart -
Our Team
Chief Executive Officer
HeartKids Vic Inc Board 2014-2015
It has certainly been a busy time for HeartKids, and will continue to be so with a lot of exciting things coming up. HeartKids Australia recently launched a new website directly aimed at young people. We are all very excited about this new initiative called MyHeart. This is a fantastic new resource for young people with heart conditions and their families. MyHeart is a place to chat, learn, grow and get the facts on living with a heart condition. A special thank you goes to IKEA our major sponsor of this initiative. When you can, please visit www.myheart.org.au to find out more about this and to experience the new site, try out the chat room and maybe post a blog of your own. On a far more local level, we are wrapping up our annual Cuppa for HeartKids campaign and to all those who participated, a massive thank you. In October we launched our 2016 Super Boss Day (www.superbossday.org. au) which is scheduled for 4th March and we are thrilled at the amount of interest shown already on top of the success of the inaugural campaign this year. It is also with pleasure I advise that it will be introduced throughout all HeartKids states which is very exciting…so watch out. More great news is that over the next month or so some more information will be coming out regarding a revamped Sweetheart Day for 14 February next year. Part of this will be that Actor, Comedian and Musical Stage Performer Shane Jacobson will be the face of this campaign…so again stay tuned. Warm regards Norm Norm Hutton CEO HeartKids Victoria/Tasmania
HeartKids Vic Inc proudly supports children with heart disease and their families throughout Victoria and Tasmania. For Tasmanian enquiries - please refe r to the back page for our Tasmanian Branch Coordinator s’ contact details.
Front cover: PJs Run Credit Union Photo courtesy of: People's Choice information for this edition. Thanks to all who sent photos and - send to: heartkids@heartkids.org.au ome welc ys Contributions are alwa s. ts On Call for printing our magazine Thanks to Fuji Xerox and Documen es. imag al processing of some digit Thanks to Gordon Patullo for post
* Chairperson: Phil Riggio * Vice Chairperson: Terry Hopkins * Treasurer: Joseph Eid * Secretary: Tania Tytherleigh * General Board Members: Anthony Flapper Erin Cervelli Jonathan Mackley David Cervelli Paul Lunardi
HeartKids Vic Inc Employees * Chief Executive Officer Norm Hutton 0409 874 452 norm.hutton@heartkids.org.au * Support Manager Tracy Stanley 0478 091 773 tracy.stanley@heartkids.org.au * Family Support Coordinator Sherrie McDonald 0431 544 510 sherrie.mcdonald@heartkids.org.au * Youth Support Coordinator Rebecca Peters rebecca.peters@heartkids.org.au * Casual Family Support Coordinator Helen West helen.west@heartkids.org.au * Member Activities Coordinator Lynette McCoullough lynette.mccoullough@heartkids.org.au * Membership/Magazine Coordinator Margaret Patullo margaret.patullo@heartkids.org.au * Development Manager Sandra Zlatanovski sandra.zlatanovski@heartkids.org.au * Operations and Administration Coordinator Paola Rossi paola.rossi@heartkids.org.au * Corporate Relationship Coordinator Luisa Kenos luisa.kenos@heartkids.org.au * Fundraiser & Events Coordinator Pruedonce Bainbridge fundraising.victas@heartkids.org.au * Magazine heartkids@heartkids.org.au
Permission to reprint any of the personal stories in this magazine is required with an from the author or the Chairperson. Any other articles may be reprinted acknowledgement to HeartKids Vic Inc. Please note that articles published in this magazine do not imply and may not reflect overall views of HeartKids Vic Inc.
endorsement
Also note that the opinions expressed in child stories represent personal the experiences and that medical details are specific to each case. Although Parents conditions may appear similar to your child’s, other details may differ. cardiologist. requiring more specific information should check with their child’s
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Coming Events HeartKids Christmas Cards Our Christmas cards don’t just look good, they do good! Each box contains 10 seed-embedded HeartKids Christmas cards and matching envelopes. Each card contains a heart shaped piece of seed embedded paper that can be removed and planted to grow Australian native Swan River Daisies. Box of 10 seed-embedded HK Christmas cards @ $10 per box. Please visit our website for ordering Seed-embedded Ch mas Cards details: $10 merry christma Pack of 10rist cards and envelopes. sEach card contai ns special paper that can be planted to grow Swan http://heartkidsvictas.org.au/how-you-can-help/buy-ourRiver Daisies. merchandise/ All proceeds from the sale these cards go towards of improving the lives and futures of those affected by childho heart disease in Australia. od Visit our website heartkids.org.a u
Aiden's Heart Awareness Family Fun Day Date/Time: Sunday 18 October, 10am – 2pm Venue: St Pauls Anglican Grammar School, Bowen Street, Warragul Date/Time: Sunday 18 October, 10am – 2pm Family Market Day featuring over 40 stall holders, rides & food. Gold coin Donation. Raising money and awareness for children with heart disease. All proceeds will be donated to HeartKids Victoria/Tasmania and used to support vital research, equipment and resources for families going through this very tough time.
Box Hill Miniature Train Day Date/Time: Saturday 31 October, 11am – 1.30pm Venue: Corner Elgar & Belmore Roads, Box Hill North Families who have a heart child or heart angel are invited to attend this fun day out, sponsored by the Kiwanis Club of Waverley. 11am– 12noon free sausage sizzle lunch, 12noon-1.30pm free train rides. Please book on www.trybooking.com/IDXV Register immediate family members only please.
In This Issue
3-4 Coming Events 5 PJs Runners Show Heart 6-7 Alexis' Story 8-9 Supporting Young People with CHD 9 Introducing MyHeart.org.au 10 Branch News 11 New Babies / Heart Child News 12 Foundation 25 13 Fantastic Fundraisers 14 Biggin & Scott Awards / Beauty in a Teacup 15 ' Off the Cuff' Luncheon / Myer Fountain Gate 16 ANZ Fontan Advisory Committee 16 Support Matters 17 Hospital Happenings 18-19 Reflections 20-21 Supporters Provide Amazing Activities 22 Donation Acknowledgements 23 Sponsors and Supporters 24 Contact Details and Diary Dates
Would you like the opportunity to park a brand new car in your driveway? The Rotary Club of Ballarat South is conducting its annual Community Raffle to raise funds for charitable organisations. This is a great opportunity for us to raise much needed funds - the cost of tickets is $2.00 and we retain 80% of all tickets sold.
Biggin & Scott Oaks Day Luncheon Date: Thursday 5 November Venue: The Royal South Yarra Lawn Tennis Club Our wonderful supporters Biggin & Scott Corporate are holding an Oaks Day Luncheon fundraiser for HeartKids. The day will include sweeps, raffles, fashions on the field competition and more. Please book your tickets: www.trybooking.com/139854
FunFlight (Waiting List only) Date/Time: Sunday 8 November, 10am – 2pm Families are invited to attend this free event, sponsored and coordinated by Funflight. Families will be treated to a free flight and lunch. Child friendly activities might also be organised. Aero clubs participating may include: Victoria - Bendigo, Echuca, Hamilton, Latrobe Valley (Traralgon), Lilydale, Peninsula (Tyabb) Tasmania - Hobart and Launceston (tbc). Please express your interest in attending this event by registering on www.trybooking.com/IDYB and and we will contact you if there is a vacancy due to cancellation.
Coming Events continued on page 4
• 1st Prize – F ord KUGA SUV Ambiente $32,138.97 inc ORC • 2nd Prize - F ord FIESTA Hatch Ambiente $19,065.87 inc ORC • 3rd Prize – Homewares Voucher $5,000.00. Tickets on sale now - please contact sherrie.mcdonald@ heartkids.org.au to order tickets. Raffle drawn at the Ballarat Market, Ballarat Showgrounds at 12.30pm on Sunday 7 February 2016.
For more information, check Facebook and our website Events Calendar: http://heartkidsvictas.org.au/events
Coming Events Tween Camp
Dates: Friday 13 – Sunday 15 November Venue: PGL Campaspe Downs The HeartKids Victoria Tween Camp brings together heart children & their siblings, aged 10-13 years, who are affected by CHD for two days of fun filled activities. Invitations will be sent to eligible heart children. Please contact tracy.stanley@ heartkids.org.au with any queries.
Broadmeadows Car & Bike Show Date: Sunday 15 November Venue: P enola Catholic College, 29 Gibson Street, Broadmeadows
World Festival of Magic Date: Saturday 21 November 2015 Show times: 11am and 2pm (90 minute show) Venue: M elbourne Convention & Exhibition Centre, 1 Convention Centre Place, South Wharf. The Lions Club of Melbourne Markets hosts this amazing show which stars Australian magician Michael Boyd, whose mastery of ‘Grand Illusion’ will amaze & astound audiences of all ages! Michael will be supported by the extraordinary artist JETON-The Gentleman Juggler – performing balancing acts seen nowhere else in the world! http://www.worldfestivalofmagic.com.au/ If you would like free tickets, please register your interest on www.trybooking.com/JCAS and we will order your tickets and post them to you about two weeks before the show. For further information, please contact Lynette – lynette.mccoullough@heartkids.org.au or 0418 548 879
Melbourne Color Run
Date: Sunday 22 November Venue: Flemington Racecourse http://thecolorrun.com.au/info/ To start fundraising for HeartKids Victoria/ Tasmania, please choose HeartKids Australia when you register, or create your fundraising page through GoFundraise.
Off the Cuff Date TBC
Team Ethan Movie Afternoon Date: Sunday 6 December Venue: Regent Multiplex, 49 Lydiard Street North, Ballarat Central. Viewing of Hotel Transylvania 2
Christmas Party Families with heart children and siblings who are 16 and under, and/or siblings of heart angels who are 16 and under are invited to join us at The Christmas Party for Special Children. Please express your interest in attending this event via www.trybooking.com/JCBW and
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note it is strictly for immediate family members only (heart child, siblings, parents). Tickets are required for this event and will be posted to you before the event. Date/Time: Sunday 13 December 2015, 9.30am – 1.30pm Venue: Moonee Valley Racecourse, McPherson St, Moonee Ponds RSVP: 5pm Thursday 22nd October A four hour stage show featuring many artists will keep the children entertained. There will be activities such as merry go-rounds, jumping castles, face painting and much more. Children (16 and under) will be provided with free food, drinks, and ice creams and there will be facilities for adults to purchase food or BYO picnic lunch. Santa will appear on stage and after Santa arrives, the toy room will be open for children to collect a present. This is an alcohol free event. Please note that we will have a dedicated area for our families to meet, however there will be a number of other charities at this event too. Contact Lynette for further information: lynette.mccoullough@heartkids.org.au or 0418 548 879
Super Boss Day Date: Friday 4 March 2016
PJs Runners Show Heart On Sunday 26 July, hundreds of pyjama-clad runners took to the streets of Melbourne for the People’s Choice PJs Run, as part of The Age Run Melbourne, presented by People’s Choice Credit Union. Almost 500 runners, young and old, rolled out of bed for the event and helped raise more than $20,000 for HeartKids Victoria/Tasmania, to support children and families affected by childhood heart disease. Amongst all the action of Run Melbourne, the PJs Runners took on the 3.5km leg along the banks of the Yarra in clear, but chilly conditions in their red and green tartan jammies. “As presenting partner of Run Melbourne for the third year, it was fantastic that 20,000 people hit the streets of Melbourne to raise $1.7 million for a range of charities,” said People’s Choice Credit Union spokesperson, Stuart Symons. “We’re particularly proud of our 480 PJs Runners, who helped us raise $20,000 for HeartKids this year,” Mr Symons said. “The proceeds from the PJs Run will provide funds for the vital support, research, awareness and advocacy that HeartKids provides for families and children facing childhood heart disease in Victoria and Tasmania,” he said. A massive thank you to People’s Choice Credit Union for their wonderful support and all the PJs Run participants for taking part in this unique event.
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Alexis' Story My second pregnancy was almost the same as my first child Bentley (age 22 months) with no morning sickness except I felt different - I just never felt like this baby was mine to keep. Two days overdue, I had my first contraction at 8:30pm and at 11:02pm I was holding our baby girl, Alexis Elizabeth. She weighed a healthy 3780 grams but wasn't interested in feeding, so lost a lot of weight. I expressed and tried to bottle feed her, but as she wasn't interested, she was given my breast milk via a nasogastric tube. We went home on day 7 without the tube, however during discharge the paediatrician heard a slight heart murmur. A referral was sent to The Royal Children's Hospital, but we were told that we shouldn't worry. I thought I was lucky with another good sleeper, but by day 13, I was starting to worry that Alexis wasn't feeding enough and was sleeping too much. The health nurse who came to visit the following day, checked her over and after making some phone calls, told me to drive carefully to the hospital where she would meet us. When we saw the paediatrician, he said "your baby is in heart failure". Our local hospital doesn't have a paediatric ward so we took Alexis to the nursery in maternity. The staff got her stabilised, ordered a chest x-ray to confirm her heart was enlarged, took a lot of blood and gave her oxygen. We waited hours to find out where she would be transferred, and finally at 11pm, she was on her way to Royal Hobart Hospital. After a visit from an RCH cardiologist, Alexis was diagnosed with Atrioventricular Septal Defect and Mitral Valve Regurgitation, both requiring surgery. Once her medication doses were perfected and we'd learnt how to feed Alexis using the NG tube, we were able to go home. We then waited for a call about surgery which came a few days later, so Alexis, Josh (her Dad) and I flew to Melbourne. Arriving on Friday April 4th 2014 at 7am, we waited in the waiting room with lots of other nervous parents until Alexis' name was called. A final weight and height was done, a quick chat to the anaesthetist and we were taken around to the preop room. We wiped Alexis down with special wipes, put on a tiny white gown and waited. Two men in blue scrubs appeared - one wheeled away the empty cot while we handed our perfect little girl to the other. It was 12 long hours before we could see her beautiful face again. Alexis was extubated overnight and was looking amazing when we arrived the next day, however by Sunday night she had been re-intubated and was very swollen and starting to deteriorate. We were shocked to find out Alexis had been scheduled for more surgery the following morning to repair the valve that was now leaking worse than before surgery. The surgeon stressed how poorly Alexis was doing and that if the repair wasn't successful the only option would be to replace the valve with a mechanical one and Alexis might return to Rosella Ward on ECMO ( a form of life support that does the work of the heart). Everything went well. There was still a slight leak but the surgeon was hopeful it would be okay, however
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another surgery was planned. I finally got to hold Alexis for the first time since she'd been in hospital - after 13 days. On Friday April 18, Good Friday, I couldn't drag myself out of bed so Josh went to the hospital on his own to see Alexis off to theatre. I'm not sure if something told me not to go. Alexis had a rough night and, around 5am she was re-intubated and they had been working hard for a few hours to stabilise her. The team was discussing whether to cancel her surgery when suddenly her heart stopped and she had a cardiac arrest. The team worked their magic and got her stable enough to make it to the operating room and we were able to give Alexis a kiss on the forehead before those big white doors closed behind her yet again. While she was in surgery, we spent time at RCH's Good Friday Appeal. Josh and I got haircuts, we watched Batman fly down the side of the building and I won a cookbook signed by George from Masterchef. Eventually the phone rang and the surgeon explained that they decided to replace the valve using a big valve which hopefully won't need replacing again until she's a teenager. Alexis returned to Rosella on ECMO after two hours. On Saturday, Bentley came back to Melbourne to spend Easter with us. On Sunday while we were at the zoo, we got a surprise call to say Alexis had been taken off ECMO and her chest had been closed. She was extubated three days later which meant we got to cuddle her and she enjoyed it this time. On April 26 we were able to give Alexis a bath, dress her and take her to Koala ward! Alexis was doing some funny head movements which caused some doctors to question if she was having seizures. An MRI showed her brain had some abnormal changes to the parts that control speech and movement, but only time would tell how much had been affected. Alexis spent three blissful weeks on Koala, we went for walks in the pram, celebrated Mother’s Day and had some beautiful friends and family come to visit us. We even had plane tickets booked to go home before I sensed something wasn't quite right. With a heart rate of 218, high temperature and uncontrollable vomiting, Alexis had her first MET call and went back to Rosella. Alexis had many complications and setbacks, one of the main ones being an irregular heart beat since her first surgery which usually
Alexis' Story continued responded well to medications. The Cardiac team decided it was time Alexis was given a pacemaker and they hoped it would improve her overall heart function. On Tuesday May 27 Alexis was wheeled away around 8:30am. About 11am we unexpectedly received a call from the surgeon who said Alexis was a very unwell baby and he wouldn't be operating today. We were very confused as Alexis had been doing really well and looked great earlier that morning. Alexis apparently suffered from a 'septic shower' which occurred when one of her lines was being changed and it led to a septic shock. After five days of antibiotics to fight the infection, surgery finally went ahead and went perfectly. Her recovery was slow and given her history, the doctors were in no hurry to extubate or remove drains and lines. She'd been on so many pain and sedation medications for so long that weaning her off them was slow and the withdrawals were heartbreakingly painful to watch. By June 9 I was mentally exhausted so I went home to Tasmania for a few nights to have some time out and to see Bentley. We were extremely lucky to then move to ‘Max’s Place’, an apartment cared for by HeartKids. While Alexis was in ICU, Josh was in Melbourne with us; while she was on Koala, my Mum would stay with us and Josh would return home to go to work and be with Bentley. The apartment was wonderful and it meant Bentley could stay for a longer period of time. It had toys, books, our own bathroom, kitchen and room for Bentley to play. We soon found a new routine - Nan would head to the hospital early, Bentley and I would hang out together before going to the hospital for lunch and Nan would take him back to the apartment to go to bed. It was extremely tiring, but so worth it to have the children both together again. Finally after 28 days, Alexis was extubated and we could hold her! As the days went by and Alexis got better, I was dreading our return to Koala Ward. I really struggled with the thought of leaving her alone now that she wasn't a tiny baby that slept a lot. It felt like forever, but after a pretty uneventful 19 days on Koala, we were heading home! Once we arrived home in Tasmania, Alexis spent four nights in North West Regional Hospital, which is only 40 minutes from our home. The purpose of this was to meet our paediatrician, dietitian, occupational and speech therapists, to organise medications and make sure we were confident giving them, and to arrange where and how Alexis would get her INR checked. When we left RCH, Alexis was completely tube fed and could
barely support her own head for more than a few seconds. Six weeks later she was rolling across the lounge room floor and just eight weeks later she was tube free. The first six months back at home were stressful and chaotic with so many appointments, feeding and medication schedules and trying to get through our first winter at home. Starting solids was a complete nightmare. It became obvious Alexis was still overcoming her oral aversion. When we first got home Alexis needed her INR checked 2-3 times a week. We made it through our first Tasmanian winter with only one hospital admission for observation when Alexis had a mild case of bronchiolitis. Alexis did give us a scare where she was quite unwell - she had a bug in her blood that can cause endocarditis. She was admitted to RCH and had a broviac line inserted so she could continue with a 6 week course of IV antibiotics at home. Alexis walked at 14 months and now at 19 months is a tiny, but healthy 9kg. The head movements ceased not long after we settled in at home. I believe they were a form of comfort in distressing times for Alexis. So far there is no concern that she suffered any permanent brain damage from her cardiac arrest. She spent 54 days in Rosella, 41 days on Koala and a total of 144 days in hospital in her first year of life. Her determination is amazing and she has well and truly exceeded any expectations. We will be forever grateful for the amazing work and continuous support of the cardiac team at The Royal Children's Hospital. Twelve months ago we never could have imagined Alexis could be so healthy, full of energy and just like a 'normal' child. But just like anyone else with a heart child we'll always be waiting for the next 'thing' to pop up. A special thank you to the HeartKids ladies and the beautiful families we've met, who will now always be a special part of our lives. Written by Alexis' mum, Hannah
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Supporting Young People... Teen Profile - Natasha Hilton Hi, my name is Natasha, I am 13 years old and I was born with a heart condition. Here is a bit about me! Who is your hero? Kelly Clarkson and Hilary Duff If you could live anywhere, where would it be and why? Noosa, because of the beach and hot weather What makes you really happy? Seeing friends and family What is your favourite hobby? Dancing – mainly ballet What was the last movie you went and saw? Insurgent What is your favourite sport to watch? Tennis If you had to eat three things for the rest of your life, what would it be? Frozen berries, mango and yoghurt How would your friends describe you in three words? Considerate, clever, chatter box
What is the best gift you have ever been given? My dad taking our family to Disneyland What would you do if you won $1,000,000? No idea! Where was your favourite holiday? Paris Are you a clean or messy person? Both Who would you want to play you in the movie of your life? Lizzie McGuire What’s your favourite music to dance to? Hip hop What three items would you take with you to a deserted island? Phone, teddy bear and a drawing book If you were the ruler of your own country, what would be the first law you would introduce? To stop animal cruelty On a scale of 1 to 10, how funny do you think you are? Eight What is your inspiration? Sabrina Carpenter (American singer and actress) What are your future goals? To be either an interior decorator, fashion designer, or dietician
Catch-Ups for Young People Our first HeartKids young adults social event took place in August, which was an awesome trivia night at the Cornish Arms Hotel. These social events for young people are a new initiative that has been developed by our HeartKids Youth Advisory Committee. We hope to continue to have more social events for teens and young people
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(15-30years old) throughout the year, so make sure you keep your eye out for the dates of these awesome social events come and join us! Rebecca Peters Youth Support Coordinator HeartKids Victoria/Tasmania
...with CHD
MyHeart – a new website for young people with CHD We’re excited to announce the official launch of our new resource for young people living with childhood heart disease. Please take the time to visit www.myheart.org.au our new site for young people living with a heart condition. MyHeart explores a range of topics relevant to people aged 13 to 22 and also has some really useful resources for their parents. At all times, MyHeart gives specific consideration to how a heart condition may impact many of the topics relevant to young people including travel, relationships and body image and more. Please note that where we’ve covered issues of a medical nature we’ve worked with experts to ensure accuracy of medical advice and information.
MyHeart has a section called The Beat where feature articles on specific topics will be addressed by guest writers. A closed forum where young people with CHD can safely chat online with their peers about topics important to them is also a part of the new site. And of course there is loads of information you just won’t want to miss! Go and get the facts on living with a heart condition. The intention is for the site content to grow considerably over the coming months & years. If you are a young person living with CHD and would like to contribute to the site, please register today. Take some time to explore the site – if you are aged 13-22 and would like your CHD story to feature on the page you could win an Xbox! Submit your own story by 27 November 2015 to be in the running to win an Xbox 360 worth $200 rrp*! Feel like going to the movies with a friend? We have Greater Union double passes to give away. To be in the running start a conversation in the MyHeart Get Social forum: http://www.myheart.org.au/forum We hope you enjoy the new MY HEART program.
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Branch News HeartKids has a number of Branches around Victoria and Tasmania. You are welcome to contact your local Branch Coordinator to introduce yourself so the Coordinator can keep you informed about activities in your area. Please see contact details on the back page of this magazine. Follow us on Facebook or watch the Events Calendar on our website for upcoming Catch-up dates: http://heartkidsvictas.org.au/events/
Branch Catch Up Days
Introducing Caitlin...
My name is Caitlin and I’m the mum of a beautiful three year old boy called Eli. I am looking forward to my role as Mildura Branch Coordinator and hope to meet lots of local families. Eli was originally diagnosed with Double Outlet Right Ventricle and had his first surgery at four days old. When Eli was three months old we noticed a difference in his breathing. While the Doctors we saw in our hometown thought Eli was fine, I knew better and asked to be transferred to The Royal Children’s Hospital to see our cardiologists. Two days after being transferred, Eli was in surgery to have the Fontan Procedure. Unfortunately it didn’t go as the surgeons wanted. I got the call to tell me that the surgery was finished and how it went but it certainly wasn’t what I wanted to hear. They said that the surgery was “touch and go”, they “hadn’t ever seen an anatomy like his” and that they “wish they had a textbook to follow”. After a few hours of being in ICU, Eli took a turn for the worst and was put on ECMO to keep him alive while the medical team figured out what to do. After a month of being in ICU, multiple surgeries in and out of our ICU room, countless close calls, several new diagnoses and three failed attempts at coming off ECMO, the Doctor’s decided to try a large central shunt to help the blood flow to both the top and bottom of Eli’s body. Finally Eli was able to come off ECMO successfully and started to improve straight away. Given the circumstances of how sick he was, we had to teach Eli how to do everything all over again such as move, suck a bottle, etc. We were moved to the Koala Ward and stayed there for another month to help our little man get stronger. Rather than go back home, the cardiologists wanted us to stay closeby, so we started ‘Hospital in the Home’ at Ronald McDonald House, Parkville. We gradually went from daily check-ups at RCH to weekly, fortnightly to every three weeks, then when the Cardiologists and Surgeons felt like Eli was strong enough, we were finally allowed to go back home but we had to come back for monthly visits. To date, Eli has had 15 open heart surgeries and we have only JUST been allowed to have his check-ups every five months. Now our little man can finally be a little boy and go to playgroup. We’ve organised for him to go to three year old kindergarten next year and we've even just had our first trip away which didn’t mean going to hospital! Things are looking up!
Father's Day Catch Up, Geelong
Bendigo group Catch Up for Dads
Mildura Branch Catch Up
A recent Devonport Catch Up
Heart Child News
Congratulations!
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New Babies
Congratulations and our very best wishes to all these
families who have welcomed new babies in recent months.
Simon and Kimberley Janiw are excited to announce the arrival of HK Cooper on 28th May 2014.
Craig and Stephanie Morley are proud to announce the arrival of HK Mitchell. Born on 5th November 2014
Scott and Mesepa Siaki are excited to announce the birth of HK Levi on 10th January 2015. Little brother to Roman. Alexander and Mae Cabangcalan are happy to announce the
arrival of HK Miranda born 12th February. Little sister to Allen and Isabella.
Steven and Nadia Nitschke are excited to announce the birth of HK Patrick on 18th March. Little brother to William.
Nick and Rebecca Kennedy are proud to announce the arrival of HK Lawson. Born on 1st April. Little brother to Zavier.
Justin and Michelle McKenzie are excited to announce the arrival of HK Tarkyn, born on 27th April. Little brother to Connor and Zaydah.
Jamie and Peta Bevan are proud to announce the arrival of HK Tahj. Born on 14th May. Little brother to Sienna and Ellie.
David Kretschmer and Sharyn Kerr are delighted to announce the arrival of HK Eden on 15th May. Little sister to Kai.
Tony and Yolanda Care are pleased to announce the arrival on 15th May of HK Valentina and sister HK Isabella (dec). Owen and Yvonne Wilkins are delighted to announce the birth of HK Eliza, born 18th May. Little sister to Marie and Jeshua. Craig and Madeline Hadden are excited to announce the birth of HK Wyatt on 5th June. Little brother to Noah and Nate.
Trevor and Hailey Jennings are excited to announce the arrival of HK Abigail, born on 24th June. Little sister of Charlotte and Rory.
Happy Birthday!
A very ‘Happy Birthday’ to all the heart children and their family members celebrating birthdays during Win ter!
Balin, aged 12, plays for the Dingley Baseball Club in the winter competition and recently was selected in the Dandenong Baseball Association under-14 representative side. He has made the School Sport Victoria under-12s softball team and will compete at the Pacific School Games in November in Adelaide. In April this year Balin was in the Southern Mariners Little League Team which won the State Championships.
Aiden has played badminton for two seasons. This year he took part in two Tournaments - in one he was the Boys Champion in his grade; in the other he was runner-up in boys doubles in a higher grade. He also won the Encouragement award for his club. These sporting achievements are something his family never imagined would be a possibility for Aiden. He continues to fight & prove just how much his heart condition won't control his life. 11
Aiden
Nathan and Selena Main are proud to announce the safe arrival of HK Hugo on 14th July. Brother to Sasha and Elise.
In each edition of the magazine we like to welcome any new babies who were born recently. If you have a new addition to your family (heart child or sibling) and would like the baby’s birth announced in the magazine, please send us the details.
Balin
Tim and Anne Harper are excited to announce the safe arrival of Elsie, born on 27th August. Little sister to HK Michael, James, Jocelyn and HK Josiah.
This is Millie, celebrating her first birthday. Millie was born with Transposition of the Great Arteries and had open heart surgery at 5 days old. She is now a very happy and cheeky one year old.
Christopher and Katherine Crinis are pleased to announce the birth of HK Elijah. Born on 9th July.
Paragkumar and Padmaben Patel are delighted to announce the birth of HK Vansh on 10th August. Little brother to Het.
Millie
HK Phoenixx, born on 11th June. Little brother to Izabella. Justin and Emma Andrews are delighted to welcome HK Logan to the family on 14th June.
William (aged 10) loves to ski. This year for the first time he participated in a program called Snow Squad where he skied every day of the school holidays and then both days of every weekend for most of the winter season. His highlight was skiing down some new black runs and Fanny’s Finish which is a double black, one of the most difficult runs at Mt Buller. He also competed in the Victorian Interschool races.
Allan and Brigette Lancaster proudly announced the arrival of
William
In 2015, HeartKids Victoria celebrates 25 years making a difference in the lives of families of a child with Childhood Heart Disease (CHD). We’ve come a long way together, but our work is not done yet. The incidence of CHD is far greater than most people expect. Although it comes as quite a shock to family and friends alike, an astounding eight Australian babies are born with heart disease every day. Heart defects are the most common birth abnormality, affecting one in every 100 babies. Some children acquire heart conditions during childhood, eg cardiomyopathy, Kawasaki disease or as a result of rheumatic fever. A disproportionate number of indigenous children suffer from acquired heart disease – often as a result of rheumatic fever, which is rampant in many communities. By becoming a HeartKids Foundation 25 member you are providing ongoing support to ensure the growth of HeartKids Victoria/Tasmania’s support services to expand our reach into the community and fund important whole of life programs. Foundation 25 helps build a great future for HeartKids. Your regular donation of $25 a month can: • Provide meal vouchers for a family for one week to help during hospital stays • Pay for three days of Family Support for in-hospital stays • Bring smiles to 24 heart children when they receive their very own BraveHeart Teddy Bear • Give two families an outing as respite • Pay for fuel for a family to travel to Melbourne from regional areas Our work is made possible thanks to our generous supporters, without whom HeartKids would not exist. ‘Family’ is at the centre of everything HeartKids does, and we warmly welcome you to join our dedicated HeartKids community - a group of like-minded individuals who share our vision to improve the lives and futures of those affected by CHD, by providing high quality, caring support, information and advocacy and to give hope by driving world class research. The more funds we raise, the more work we can do, the greater our impact. You can be a part of our
Giving HeartKids a better tomorrow
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For more information visit www.heartkidsvictas.org.au
Fantastic Fundraisers Declutter for a Cause HeartKids has implemented a new fun way to fundraise! Join our online garage sale created through Facebook where HeartKids members and the general community can sell their unwanted preloved goods. A great way to clear some of the clutter around your house this spring, whilst raising vital funds for HeartKids.
Simply upload items you wish to sell, or buy an item listed on the page. All the Proceeds from goods sold directly can then be donated to support HeartKids Victoria/ Tasmania. Please follow the sale on the ‘HeartKids Victoria DeClutter for a Cause’ Facebook page.
Cuppa for HeartKids Our Cuppa for HeartKids campaign during August/September has had another successful year raising over $13,611.91 (and counting). These events not only provide much needed funds for HeartKids but also raises community awareness about Childhood Heart Disease. Every year we are overwhelmed at the time and effort that our community and corporate fundraisers put into hosting their own Cuppa event. Over 30 individuals and businesses put on bake sales, dress up days, craft stalls, sausage sizzles, sold merchandise and ran raffles all to raise funds and awareness for HeartKids Victoria/Tasmania. A very special thanks goes out to a few of our Cuppa Superstars; Dyonne Rhodes raised over $4500, Kate and Nathan McDonald raised over $4000 to be shared between HeartKids Victoria/Tasmania and the ANZ Fontan Registry, Briana Weir (Hallam Senior College), Kristy Bugg, Sam Lawson & Melissa Saagy Walsh, Claire Gluyas & Larnie Gale, and Ebony Mallinson. To read about some of the inspiring and creative Cuppa events, please visit our website.
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A Commitment to... Biggin & Scott Awards Night In September HeartKids was the recipient of fundraising at the Annual Biggin and Scott Awards Night. CEO Paul Stoner announced many Awards to both individuals, such as The Auctioneer of the Year, as well as to Offices. The Awards recognise various achievements during the course of the year and is not only significantly appreciated by all who attended, whether they were either finalists or indeed winners, but was also a great fun night and represents the sense of family so
well developed by all at Biggin and Scott. During the evening HeartKids received the financial benefit for a number of auction items offered up by Biggin and Scott Offices as well as the proceeds from a partnership they have with Compare and Connect whereby $5 from each service provided is donated by Compare and Connect to HeartKids. A total of approximately $15,000 was raised between the two on the evening.
Beauty in a Tea Cup On Sunday 13 September Mrs Australia Globe hosted the “Beauty in a Tea Cup” afternoon tea at the chic and fabulous Stables of Como in South Yarra. The event was thoroughly enjoyed by all that attended – the weather was perfect and everyone loved being outdoors enjoying the sunshine in the picturesque gardens. The food was delicious, guests loved the beauty bar makeovers and entertainment by musician Jake Gordon. Money was raised by a raffle and balloon prizes with all proceeds donated to HeartKids. Thank you to Mrs Australia Globe, The Stables of Como, Coffee Not Coffee, De Ross Artistry, Saka Water, Jake Gordon and all the Mrs Australia finalists who worked together donating their time to make the event amazing!
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...Making a Difference 'Off the Cuff' Luncheon At the end of July we held the third in our new speaker’s series luncheons which featured Jerry Grayson as our guest speaker. HeartKids were extremely fortunate to have Jerry speak as he literally took time out from his national book tour for Rescue Pilot which recounts his personal experiences as the youngest pilot ever to be accepted into the Royal Navy at 17 years, and that by 25 he was the most decorated pilot in their history. More recently Jerry established Helifilms which designs and delivers aerial stunt work for movies such as the James Bond blockbusters and Black Hawk Down. As is now standard, the audience raised funds - this time it was for our Father’s Day Hampers which were delivered by Tracy and the team to Dads at The Royal Children’s Hospital.
Myer Fountain Gate
Over the past 12 months, HeartKi ds Victoria/Tasmania has been generou sly supported by Myer Fountain Gat e. The Myer Stores Community Fund is dedicated to supporting innovative projects for Children and Youth which enrich their life experiences. Once a month the gen erous staff at Myer Fountain Gate have held monthly bake sales, sausage sizz les, craft sales, lunch pack days and numerou s other activities to help raise money for HeartKids Victoria/Tasmania. On 28 August HeartKids staff and families were invited to the Fountain Gat e store for a morning tea and cheque presenta tion. We were very overwhelmed with the generosity of the staff, having provided bea utiful food, drinks and even show bags for our special HeartKids families who attended. The generous support given by Fountai n Gate staff resulted in HeartKids Victoria /Tasmania receiving a donation of $9000 tow ards our In Hospital Support Programs. Thank you so much for your suppor t MYER …..We truly appreciate it.
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ANZFAC It is with great pleasure that we introduce to the Fontan community the Australian and New Zealand Fontan Advisory Committee (ANZFAC). ANZFAC was formed in late 2014, following the inaugural Fontan Education Day. The committee comprises of parents of children/adults with a Fontan Circulation, adults with a Fontan Circulation, Fontan Registry staff, medical practitioners and others. We meet on a regular basis, to discuss and address issues affecting the Fontan community. The committee currently has ten members from Australia, with a view to increase to fifteen and include people from New Zealand. Our current members: • Jonathan Mackley (Chair) - Adult with Fontan circulation & HeartKids Board Director • Rachel Maree (Vice-Chair) - Parent of Fontan child • Louise Pickford - Adult with Fontan circulation & Hospital Recovery Clinician • Kirsty Robertson - Parent of Fontan child & Nurse • Brian Rose - Adult with Fontan circulation & Nurse • Rebecca Peters - RCH Transition Support Service/Fontan Registry • Tracy Stanley - HeartKids Victoria/Tasmania Support Manager • Associate Professor Yves d'Udekem - Paediatric cardiac surgeon (RCH) and founder of Fontan Registry • Ingrid King - Fontan Registry database manager Fontan Registry • Matthew Orchard - Fontan patient who has had a heart transplant For more information please visit the Fontan Registry website: http://www.fontanregistry.com/anzfac.aspx We want to know what matters most to you and look forward to working together. Kind Regards, The Australian and New Zealand Fontan Advisory Committee
Support Matters Welcome to the Spring edition of our magazine. It has been a particularly cold and long winter and we are happy to see longer days and more sunshine. We are excited to welcome Helen West back to the HeartKids Support Team. Helen previously worked as a Family Support Coordinator at HeartKids Victoria/Tasmania and is joining us in the new role of Casual Family Support Coordinator. Helen’s role will ensure that our family support services continue when staff are on leave, unwell, attending conferences and training. Another exciting development in line with one of our key focus areas to better support teens and young adults was the launch of MyHeart, our new online resource for young people living with CHD. Please read the full article on page 9 and make sure you visit www.myheart.org.au and let us know what you think. We have started a walking group for families at The Royal Children’s Hospital. Please join us on Mondays and enjoy some fresh air and exercise – we are lucky to have the hospital located near Royal Park and now the weather is warmer we can enjoy the outdoors. We meet outside the green lifts on the third floor at 12:30pm. This year seems to have flown by. We are busy planning our Tween Camp, Christmas party and other summer events. For the latest information on upcoming activities and events please check the Events Calendar on our website www. heartkidsvictas.org.au A reminder that Privacy Laws prevent us from viewing the patient lists in hospitals. If you would like one of our team to visit you, please advise the ward clerk/nurse/send us a message either via email or text message. You can also write “HeartKids visit requested” on the whiteboard in your child’s room. Enjoy the warmer weather! Tracy, Sherrie, Rebecca & Helen
RCH Morning Teas
All ward, ICU and outpatient fam ilies are welcome to join us for mornin g tea, held on Tuesdays and Thursdays from 10:30am - 12:00pm in the Par ent Lounge on the 3rd Floor. We look forward to seeing you the re!
Support at MonashHeart
Our Family Support Coordinator ic on Sherrie McDonald visits the clin Wednesdays 1.00pm - 4.00pm Medicine Monash Children’s Clinic, Special ) Centre (next to McCulloch House 246 Clayton Road, Clayton 16
IN HOSPITAL
A special hello and our very best wishes to all the heart children who hav e been in hospital in the last three months.
Hospital Happenings Fathers Visit the Footy
Thanks to Hawthorn Football Club some of our in-hospital parents Day enjoyed an outing to the football on the Saturday before Father’s MCG. the at to watch Hawthorn v Carlton
Patch the Heart Lion Visit
Children on Koala ward enjoyed a visit from Patch the Heart Lion. Thanks to the generous fundraising efforts of Felixstow Community School and The Toscana Club we were given a Patch Pack to give to the children on the ward.
Father's Day
On Father’s Day HeartKids distribu ted gift bags to the fathers whose children were patients on Koala ward (Cardiac/Renal) and Rosella ward (PICU). Thank you to those who donated items and to the volunteers, Michelle and Anna, who packed the bags.
Farewell Karen Wall
Chaplain Karen Wall finished her placement at The Royal Children's Hospital at the beginning of October. Karen will be greatly missed by children, families and staff. Karen was a regular at our morning teas and entertained the children with her drawing talents. She did her job with diligence, integrity, humour, creativity and calmness. Good luck Karen for whatever you do in the future.
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Reflections - Sibling Grief Experiencing grief is an extremely difficult process for anyone, however losing a brother or sister is especially complicated because of the bond formed between siblings. You don’t realise how much influence your sibling has on your life or the small things you love about them, until they are no longer in your life. In many cases the surviving sibling feels they have lost part of themselves, as their lives are intertwined; and when the siblings are twins, the bond can be even stronger. They only have their memories of their past; and they lose their future as it ‘should have been’ with their sibling. Siblings are often referred to as ‘the forgotten griever’; their pain is very real and intense. Proximity in age between siblings as well as time spent together during childhood can intensify the emotions and consequently, the grieving process for children who lose a sibling. If siblings are close together in age and there’s a strong bond, the impact that the death causes could be more traumatic. These factors amplify the loss; however children process grief in their own way, just as adults do. Teenagers I interviewed described it as: “There’s a hole there, an emptiness that will never again be filled. We miss them and grieve for them every day and always will. Your life has forever changed, the way you see everything in the world is utterly and completely altered. Nothing you do from the time you lose your sister or brother is unaffected.” For children, losing a sibling is far worse than for adults because of their lack of understanding and emotional immaturity and vulnerability. Adults are much better equipped to deal with loss because of life experiences and their thought processing abilities. Naturally younger children lack the cognitive ability to associate their emotions with the death of a sibling. They can become confused and their emotions present in the form of anger, withdrawal, difficulty concentrating, nightmares or even physical symptoms. Not mentioning the child just contributes to the confusion and intensifies the hurt; they want to remember and talk about the sibling they lost, even though it hurts. Grieving siblings need reassurance that they are not alone in their pain and that others understand the depth of the loss. In saying that, parents are understandably preoccupied with their own grief, thus overlooking the needs of the grieving siblings. In effect the loss of their sibling is tremendous, but they also lose their parents in a way. A surviving child may feel the pressure throughout many stages of their lives, to make up for what their parents have lost and trying to make them happy again. Children perceive and understand death differently at different ages. This can make it a
harrowing inner conflict; the grief may come at varying stages as the child processes the reality of what has happened. They revisit the loss over time, and their coping skills will change as they gain maturity. The trauma is accentuated when a bereaved sibling has witnessed their sibling suffer with an illness or disease. Time becomes distorted and the loss is unexpected; this may cause prolonged periods of denial and shock.
also survivor guilt, feeling guilty for living; this is all consuming and usually takes a long time to go away, if it ever does.
It’s common for children to pretend, either as part of their denial to block out pain, or as a result of their lack of understanding, that their sibling has gone away for a holiday or a school trip as a coping mechanism. They think it’s a bad dream, not wanting to believe their brother or sister is dead. They refer to them as being alive and can even sense their presence. They evade the certainty that they will never see their sibling again. Eventually though, children must understand that they cannot bring their sibling back, as part of their own recovery.
Losing a sibling is a lifelong journey that never stops; the grief is never over. Each event stands as a reminder of the terrible actuality that their sibling is not there. For the rest of their lives, no matter how much time has passed, they will suddenly think of something, some tiny little thing, and the anguish and grief hits all over again. It is important that a supportive system of sharing, honesty and open communication is provided, to allow a child to grieve. Losing a child is tragic for everyone involved… however sibling loss has a special grief all of its own, and it never goes away.
Anger is one of the strongest emotions children experience when losing a sibling. Their anger tends to be directed at God, for allowing this to happen and not protecting their sibling; at themselves and their parents for not being able to do anything to stop the death; and at their sibling for dying. Specifically children blame the doctors who couldn’t save their sibling, as part of their own helplessness. The anger never really goes away for most children; it may disappear for a long period of time and then suddenly reappears. Especially in adulthood as they change and experience important milestones; it’s all reprocessed and they relive the pain. They realise what their sibling is missing and the relationship they themselves have missed out on as a result of their death. Thus children do not simply move on from such a personal and permanent loss. They experience the different stages of grieving throughout their lives; they may initially skip a stage and regress back to it later. Special events such as birthdays and the anniversary of the death of their brother or sister provoke feelings of anger in children; this can lead to the child misbehaving or acting out, as part of the hurt and pain, which they are ill equipped to deal with. As the child grows older the depression and loneliness can get worse. One of the most overwhelming emotions that children experience when losing a sibling is guilt. Siblings have a unique and special relationship where they love/ hate each other, they argue, there’s rivalry, teasing and defending. After the surviving sibling has lost their brother or sister, they analyse every thing they can remember of what they ever said or did to their sibling. Those childhood fights and arguments turn into rueing and lamenting; and the guilt is irrational but overpowering. There is
Alongside the guilt there is regret. The most common regrets include not being able to say goodbye, taking the sibling they have lost for granted and not appreciating the time they had together; fighting with them and not telling them how much they loved them.
She was standing in place for her kindergarten concert, smiling, happy and excited to be singing with her friends. I was hoping this would give her a break from all the misery that had infested itself into our home. We were surrounded by the memories of the beautiful little boy we had lost; everything had become insufferable, even all the good memories. It had been six months but the pain was still raw. She appeared to be coping well I thought; she went about her day with ease, singing, playing with our dog, drawing… all the usual things that kept her occupied day by day. She talked about him sometimes, but never with the devastation I felt when simply uttering his name. She sang so beautifully; innocent and seemingly oblivious to the cruelties of the world around her. Of this I was glad! After the concert I ran up and hugged her; she was the only one who brought some joy into my otherwise futile existence. As I held her, I felt her body heaving and tears streaming down her face. “What’s the matter honey?” “I thought Jacob was going to come to see my concert. We practiced the songs together and he said he would be here. Why isn’t he here mummy, he promised he would be here?” My heart broke for her and for all that she would miss out on, not having her brother in her life. It was only then that I realised she didn’t understand that he was never coming back! Written by Christina Georgiades
The Australian Centre for Grief and Bereavement’s website has some useful information for supporting children and adolescents : http://www.grief.org.au/grief_and_bereavement_support/understanding_grief/supporting_children http://www.grief.org.au/grief_and_bereavement_support/understanding_grief/supporting_adolescents 18
Reflections In Loving Memory of Isabella Seisdedos 5th July 1995 ~ 8th August 2015 Our daughter Isabella has been a gift from God to us, but unfortunately that gift has been taken from us. Before Isabella was born we both prayed for a beautiful daughter who would touch the hearts of all those who would come in contact with her. We didn't realize the fullness of this prayer until each experience unfolded before us. Not only was Isabella born with a heart condition but she had the ability to open each person's emotional heart. They were touched by her kind and gentle manner. She was never judgemental or competitive, she was always sensitive to someone's needs. From day one since her birth Isabella had many medical procedures and surgeries. She introduced us to the hardships and sufferings that other families were enduring with sick children - something we had never witnessed before on a personal level. It made us realise how trivial and unimportant the problems of everyday life were. Isabella was a loving, caring person, her heart had the capacity to show great empathy. She was a young 20 year old who had the innocence, purity and essence to love the presence of young children. Yet her inner wisdom, tenacity, strength and beauty shone through her. With this she taught us on how to become a better person. Isabella brought to us as parents a purpose, a purpose that gave real meaning to our lives. We ask God now to guide us along the right path to find another purpose in our lives. But for the time being we are appreciating the time to pray and reflect on our present situation. To our beautiful, precious daughter Isabella, we thank-you for the wonderful memories, your joyful smile, the music and the incredible journeys you took us on. With love in our hearts, Papa and Mama. 'We asked God for a beautiful daughter and He gave us a lot more.'
The Bereaved PICU Parent Study What is this study about? This research study aims to explore the experiences of parents during and after the time their child passed away in a Paediatric Intensive Care (PICU) setting, and their interactions with health care providers during this time. We are seeking parents whose child passed away in any Australian PICU within the last 6 months to 2 years.
What is involved? A meeting (interview) with the researcher to talk about your experiences, feelings, needs and perceptions of the time your child died in the PICU. Want to know more? Ashleigh Butler (Interviewer, PhD Candidate): 0497 270 526, abut2@student.monash.edu Dr. Beverley Copnell (Primary Investigator): 03 9905 4836
Thinking of You
Our thoughts and prayers are with the families and friends of all Heart Angels.
Heart Angel Remembrance We remember these Heart Angels whose birth date or anniversary is in the Spring months.
Birth Dates Eliza Davis 3 September 2010 Cody Kent 5 September 2003 Meher Pahwa 10 September 2011 Avelynn Wood 10 September 1999 Estelle Slater 11 September 2013 Peter Elder 13 September 2001 Mayah Gambin 18 September 2013 Thomas Goodfellow 24 September 1999 Bryce Ibbs 7 October 1989 Rowan Seward 7 October 1994 Kiara Ward 8 October 2005 Jesse Cotter 12 October 1990 Matthew Moran 20 October 2004 Oskar Dobell 26 October 2013 Simon Holmes 28 October 1994 Jacob Holden 5 November 2001 Alyssa Alsop 7 November 2001 Katherine Lin 8 November 2013 Owen Crew 15 November 2005 Mia Campbell 16 November 2009 Georgia Morrison 16 November 1998 Michael Meares 19 November 2007 Frank Desensi 20 November 2004 Parker Easton 26 November 2013
Anniversary Dates Asha McNamara 10 September 2011 Phoebe Rolando 12 September 2012 Eliza Davis 13 September 2010 Blake Gordon-Cooke 13 September 2013 Peter Elder 14 September 2001 Dylan Grilli 17 September 1994 Cody Kent 18 September 2003 Kiara Ward 21 September 2011 Jaime Ekberg 3 October 2007 Finn Adair 11 October 2006 Corey Lake 11 October 2013 Estelle Slater 20 October 2013 James Kelleher 22 October 2008 Oskar Dobell 26 October 2013 Kiera Ziegenhardt 29 October 2010 Simon Holmes 8 November 2012 Alyssa Alsop 11 November 2005 Adem Urban 12 November 2013 Meher Pahwa 14 November 2011 Stephanie Williams 14 November 2013 Jack Farley 23 November 2013 Thomas Goodfellow 29 November 2010 Zach Beadel 29 November 2010 Katherine Lin 30 November 2013
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Our Supporters Provide... Volunteering Volunteering Victoria has announced a new definition of volunteering which we would like to share with you. “Volunteering is time willingly given for the common good without financial gain” HeartKids is lucky to have a great team of volunteers, both members and corporate, who give their time willingly for the good of our charity. Volunteers who have helped this year have enjoyed being part of our team and have found it very rewarding. Maybe you might too? If you would like to be contacted when volunteer opportunities arise, please contact Lynette for a registration form: lynette.mccoullough@heartkids.org.au or view volunteer roles which are listed on: http://heartkidsvictas.org.au/how-you-can-help/ volunteering
Celebrating the contribution of some of the recent Family Camp volunteers....
You can help HeartKids in numerous ways … • Administrative Duties • Manning stalls • Helping with the coordination of support and fundraising events • Face Painting • Gift wrapping • Shaking donation tins at events
Circus Quirkus
A number of our families gathered in the Plenary Hall of the Convention Centre in August along with families from other charities to watch this year’s Circus Quirkus show. We thank the Rotary club of Preston and local businesses for offering us free tickets for this show. “I just wanted to thank you again for the tickets to Circus Quirkus. We had so much fun. They are fantastic performers and very entertaining. We are very fortunate to be able to see performances like these for nothing. We are so grateful to the Rotary Club of Preston and their local businesses for their generosity.”
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...Amazing Activities Kiwanis Sponsored... Candlebark Farm Family Camp At the start of the spring school holidays, 15 families arrived at Candlebark Farm, Healesville, to enjoy a weekend together. Thanks again to the Kiwanis Division 6 clubs and SafeonSite who kindly sponsored the camp and to the Kiwanis/HeartKids committee and volunteers who worked together to coordinate the weekend. This camp provided an opportunity for our families to have an exciting weekend away where they could relax in a lovely rural environment, enjoy time with their family and also share experiences with other families who understand what life is like to have a heart child. We particularly thank: • Kiwanis clubs in Division 6 • SAFEONSITE • Candlebark Farm Manager, Michael Hill • The Art Cabriolet • Committee members/Weekend volunteers: Bruce, Shirley, Brian, Tash, Margaret, Lynette • Weekend Volunteers: Chris Baker (First Aid Attendant) Angela, Cameron Simone, Paul, Paige, Shaye Kiwanis volunteers Teena Kay-Class as Elmo • Emergency Services: Healesville Police Force Badger Creek CFA Victoria SES Healesville Unit Healesville Ambulance Service • Donations: Yarra Junction Bendigo Bank Britz Marketing Australasia
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Thank you for your recent gifts... Ample Café and Bar Austin, Monica Biggin & Scott Bonbeach Primary School & Preschool Commonwealth Bank Staff Social & Charity Club Dimmick Charitable Trust Dingley International Hotel Drew, Tammy Geelong Community Foundation Giblin, Lisa Gibson, Libby Girton Grammar School Grimbos, Anita Grill'd Gruber, Maria IKEA Jet Couriers Kelgrove Holdings Kiwanis Club of Brighton Inc Kiwanis Club of Cobram/Barooga Inc Kiwanis Club of Melbourne Inc Kiwanis Club of Moorabbin Inc KIKGROUP Magistrates Court of Victoria Melbourne Shriners
McEven Foundation Myer Fountain Gate North Melbourne Football Club Parkville Store Price, Matthew Ray, Paul Red Rooster Bendigo Ritchies Stores Robinson, Jamie Specsavers Pty Ltd St Catherine's School Swan Hill Specialist School Tiemens, Ingrid Thompson, Napier Williams, Christian Women's Association of Victoria Inc Woolworths Wyndham City Council Z Transport Group Memorial Donations in memory of: • Mayah Grace Gambin • Sam Martin • Isabella Diana Care • Benjamin Jones
Financial contributions over $500 are acknowledged in this column.
Holy Spirit Community School Fun Run
Are your details up to date? We really like to correspond with you via email when we can. This helps us contact you quickly and saves on printing and postage costs. Please help us by letting us know your email address and keep it up to date. If you have moved house recently, please let us know your current contact details. Please send updates to: heartkids@heartkids.org.au Thank you!
Holy Spirit Community School in North Ringwood raised $14,500 by holding a Fun Run. 10% of the proceeds were generously donated to HeartKids. Thank you to students Abby, Jessica & Claudia who presented our Family Support Coordinator, Sherrie McDonald, with a cheque for $1450.
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Sponsors and Supporters Victorian Partners:
ROTARY CLUB of TULLAMARINE
National Supporters: Founding Sponsor Principal Partner Major Partners Founding Partner - Grants-In-Aid Corporate Supporters
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Diary Dates
ily Day n Awareness Fam nday 18 Oct - Aide Su Train Day ber - Box Hill Mini Saturday 31 Octo t Thursday 5 November - Biggin & Scotncheon Oaks Day Lu
ber - FunFlight Sunday 8 Novem een Camp Fri 13–Sun 15 November - Tw ke Show eadows Car & Bi n 15 Nov - Broadm Su Color Run ber - Melbourne Sunday 22 Novem Date TBC - Off the Cuff Afternoon – eam Ethan Movie T c De 6 ay nd , Ballarat Su Regent Multiplex tmas Party for Sunday 13 December - Chris Racecourse at Moonee Valley Special Children iday 4 March 2016 - Super Boss Day Fr
eck inside or these events ch For more about .au rg s.o ta vic to www.heartkids
MELBOURNE METRO BRANCHES Bundoora Jessica Shakespeare 0409 165 004 jess.k.shakespeare@gmail.com Dandenong Lucy (Fatima) Hussain 0430 738 820 redrosesforlucy@hotmail.com East Bentleigh Maggie Stavrou (03) 9563 7133 maggiestavrou@live.com.au Eastern Suburbs Pavlina McMaster 0438 233 414 pavlina@fastmail.com.au Janita Felici 0422 976 024 janitafelici@gmail.com Frankston/Peninsula Maxine Selzer 0421 561 958 maxineselzer@msn.com Melton Lauren Tyrrell 0424 594 757 lauren-tyrrell@hotmail.com Pakenham Joanne Arrowsmith (03) 5967 7083 joarrow@bigpond.net.au Point Cook Jonathan Mackley 0411 114 008 jonathan@mackleyhq.com Tullamarine Paige Donnelly 0424 239 964 paigeeloo@gmail.com REGIONAL BRANCHES VICTORIA Albury/Wodonga Cathie Kelly 0417 049 341 clonnie33@hotmail.com Bairnsdale Caroline Foard 0438 928 821 cfoardy@yahoo.com
go
HeartKids Vic Inc
CONTACT US PO Box 803 Parkville Victoria 3052
P: (03) 9329 0446 E: heartkids@heartkids.org.au
VISIT US Suite 33 204 – 218 Dryburgh Street North Melbourne 3051
Facebook: HeartKids Victoria/Tasmania Twitter: @HeartKidsVicTas Instagram: heartkidsvictas
ARN: A0021470B ABN: 16 336 986 918
www.heartkidsvictas.org.au
Contact Details Ballarat Rohini Dobell & Alan Smith 0407 851 648 alan_17@live.com.au Bendigo Natasha Prendergast (03) 5441 8262 or 0421 590 169 goliathgroup@bigpond.com Clare Fountain 0418 140 347 clarefountain@netspace.net.au Nadine Daly 0413 710 342 dalys@tpg.com.au Cobram Bianca Quinane 0419 674 408 biancz1979@hotmail.com Echuca/Moama Tracey Hard 0438 962 056 tracnsteve@bigpond.com Geelong Libby Gibson (03) 5250 2439 0411 057 905 libway2000@yahoo.com Horsham Gaynor Baker (03) 5384 2280 mtbcarpentry@bigpond.com Kyneton/Woodend Amy Crosbie 0411 552 264 amy_emmett@hotmail.com Mildura Caitlin Andrews 0412 447 269 caitlin.andrews@hotmail.com Portland Kerry Sluggett (03) 5523 2503 0418 312 320 ksluggett@iinet.net.au Shepparton Cheryl Alexander (03) 5825 4005 chezalex70@bigpond.com Stawell Leanne Amarant 0419 864 412 leanneamarant@hotmail.com
Traralgon Chrissy Ades 0400 857 813 cat_razor@hotmail.com Wangaratta Lisa Dekeling 0421 655 636 & Shane Hack 0488 221 184 lisadekeling@optusnet.com.au Wonthaggi Erin Howell 0431 702 863 howells.8@bigpond.com TASMANIA Burnie/Devonport Claire Gluyas 0408 351 661 richardsclaire@yahoo.co.uk Hobart Paul Hyland (03) 6247 8435 0418 561 504 paul.hyland1@bigpond.com Launceston Kylie Smith (03) 6393 6240 0448 983 587 kylie.smith@heartkids.org.au SPECIAL INTEREST GROUPS 22q11 The VCFS and 22q11 Foundation Maria Kamper www.vcfs22q.org.au BEREAVED FAMILIES SUPPORT CHD Child Loss AUSTRALIA Facebook group BRUGADA SYNDROME Pavlina McMaster 0438 233 414 pavlina@fastmail.com.au CARDIOMYOPATHY ASSN of AUST. Website: www.cmaa.org.au/ DOWN SYNDROME Sam Jackson 0439 360 035 mummee1973@optusnet.com.au
EBSTEIN’S ANOMALY Kathy Sims (03) 5831 1110 kjsrms@bigpond.com hearts4heart - Support for Adults with Heart Disease Tanya Hall 0426 240 636 info@hearts4heart.net.au hearts4heart.net.au HYPOPLASTIC LEFT HEART SYNDROME & SIMILAR CONDITIONS www.hearts-of-hope.org Leanne Amarant (Victoria) (03) 5358 2945 Leanneamarant@hotmail.com Csaba Ovari (Tasmania) (03) 6229 8169 csaba.ovari@hearts-of-hope.org KABUKI SYNDROME Stacey McKiernan (03) 5275 1542 stacey@sakks.org Website: www.sakks.org KAWASAKI DISEASE Shirley Mates (03) 9894 1257 info@kdfoundation.org.au Website: www.kdfoundation.org.au LONG QT SYNDROME (LQTS) Sherrie McDonald 0431 544 510 sherrie.mcdonald@heartkids.org.au www.sads.org.au or www.sads.org.uk/ MULTIPLE BIRTHS April Schubert 0407 551 967 (02) 6056 6448 april.schubert@bigpond.com MUSLIM FAMILIES Lucy (Fatima) Hussain 0430 738 820 redrosesforlucy@hotmail.com OVER 18’s Erin Cervelli (03) 9513 9030 PACEMAKERS Mandy Tichelaar (03) 9728 6984